What's up with me

My collapsed lungs pulled me into my pulmonologist's office yesterday. It was about time, the shortness of breath was getting ridiculous.

The bad news was that my lungs "look exactly like someone with emphysema." The good news was that they tested me and I don't need supplemental oxygen.

As you might imagine, it wasn't a fun visit.

I suppose the more meaningful good news is that they aren't going to do any procedure right away to try to reinflate either of the lungs. (My right lung is procedured-out, anyway.) I can muddle along, watching myself carefully, as they huddle up to develop a plan and we schedule something after I've gotten to have some time back on brivanib. The likeliest thing that will happen is that I will have surgery that, essentially, leave a small permanent chest tube with a little valve that can be used to drain out any air collapsing the lung. I doubt this will allow me to resume flying, but it will give everyone peace of mind as I live my life.

The best news is that I have started taking a nerve blocker, neurontin, that has done wonders for my pain. We reduced the size of my fentanyl patch from 100 mcg/hour to 75, I've cut way back on the dilaudid I take for breakthroughs, and I am more comfortable than I have been in weeks. Yay! It's hard to be much of anything to anybody when you are in a lot of pain. The downside, of course, is that the neurontin has left me fatigued in a new way, but there's a good chance that will get better with time. I can also see reducing the fentanyl patch another notch in the near future.

I also had a thought as I left the doctor's office: Could the brivanib be causing some of my shortness of breath? I need to look at the side-effects sheet, but I think that's something that can happen. I may be crazy, but I feel significantly more breathless than I did in NY, even though my lungs look basically the same. Although it wouldn't make a difference in terms of managing it (I can't comfortably walk across the damn house at this point), it would be nice to know that the side effect part of it, at least, was temporary.

I'm also hoping to put something delicious on the smoker this weekend.

***

For other folks with epithelioid sarcoma, on my scans this started first with harmless little speckles (not obviously malignant nodules), that kind of grow a little and pop. (The move is from periods to O's.) This can blow through the lining of the lung and cause a collapse. Also, much of my disease, apparently, is on the outside of the lung, kind of drilling inside. E-mail me if you're seeing this as an early issue; even our highly experienced NY doctor didn't recognize this as a disease process when it was beginning back in 2008.

Sweetness

A few days ago, T. and I were getting ready for bed and she surprised me by triumphantly presenting Charlie and the Chocolate Factory as her next book. She had watched the movie with a babysitter, and now she was hungry for more.

I was thrilled, and not just because she previously favored a schlocky series of books about fairies produced by a conglomerate under the penname "Daisy Meadows." Charlie was an important book for me, one of the first I read and loved by myself, and I couldn't wait to see how she would react to Charlie's basic decency, the loathsome habits of the book's other children and, of course, the wonders of Willy Wonka's factory.

So far, it's gone as well as I hoped. She's rapt. After the first couple chapters, she regaled co-reader L. and myself with a rundown of what had happened so far. "The boy loves chocolate... and, and, and he only gets it once a year, so when he birthday come, he puts the bar in a box! And looks at it! And, and, and then he pulls wrapper and takes a small, tiny bite..."

Last night, we were reading -- watch out, a spoiler is ahead -- the part where the golden tickets are loose in the world and Charlie is about to get his annual birthday bar. T., who had been squirmy, stills and presses her round little body against mine. Her blue eyes are bright and avid. She is sure Charlie is going to get the ticket right then and there, and she gets progressively more excited as the book builds up toward the moment when the boy pulls the wrapper off his Wonka's Whipplescrumptious Fudgemallow Delight.

I almost feel bad for her -- but at the same time, her entire being is vividly conveying the thrill and discovery of reading, one of my highest aspirations for her. A few years ago, there were a lot of reasons to think that I wouldn't know T. at five. Now there are a lot of reasons to think I won't know T. at 10 or 15. I certainly won't see how her story comes out.

But as I read a great book with a budding great reader, it's clear that, sometimes, the end isn't as important as how you get there. The stuff in between is exciting, too. Charlie rips off the wrapper, revealing only chocolate, and T. is immediately and vocally appalled. "Daddy!" she shouts, as if I were personally responsible for throwing yet another disappointment in poor Charlie's path. T. is furious, but I am secretly and silently delighted. The story continues. Sweetness lies ahead.

Tears of a...

I let myself cry like a child over my illness today. I did everything except throw myself to the floor and pound the carpet with balled fists. I let myself complain about cancer: I moaned that I was too young, that it wasn't fair, that I couldn't stand the anguish of everyone I love let alone my own pain, that I was tired.......

*

This is a voice I rarely allow myself to speak -- scream -- with.

When I was first diagnosed, sent shocked and spinning by the unreality of it all, one simple question persistently bubbled into my mind, and I grabbed on to that query and let it buoy me as events and anxiety churned around me ever higher.

It was: How do I want to live?

Live.

It was such a liberating idea: I was seriously ill, yes, but I had a choice -- a multitude of them, every day -- and I could use the intensity of living a life at risk as a tool to find better answers. I might not get all the life I wanted, but I could get closer to being the person I wanted. This question, unlike most of the other ones swirling around -- what second opinions should we get? is this treatment going to work? how long am I going to live? -- had answers, my answers. And the conclusions I drew from it pointed toward life instead of death.

*

We know that fairness has nothing to do with cancer, and that thinking about one's situation in those terms is a dangerous distraction; it's the signpost that points toward disengagement and death instead of acceptance and life. Yes, it's not "fair" that I got sick at 34 and my kids and wife won't get to spend the time with me they deserve. It also wasn't "fair" that I was born vastly more wealthy than 99 percent of the world's population, or that children in Africa are dying unnecessarily as I type this, or 20-year-olds are coming home from wars with multiple amputations, or...

Feeling this way, knowing these things, makes it very hard for me to just straight-up unabashedly feel sorry for myself. (Or at least to admit to feeling that way.)

That's a good thing most of the time.

But even though my eyes feel like they've been rubbed in sand and I have a headache, I'm glad I let myself bawl for my body and my life without an intellectual screen filtering out "improper" thoughts. I still ask myself all the time, "How do I want to live?", and that question will, at times, inspire me to push myself off the couch with both fists and find one of the children to embrace. But one way I don't want to live is to be in such strict control of my thoughts and emotions that I never let myself express an intellectually nonsensical feeling. Fairness has nothing to do with cancer -- but today I felt like it did, and I let myself say that and cry for the loss of the life that I imagined I would have.

Right now, though, I'm going to get back to work.

Ooof

For some reason, this hit me like a punch in the gut. A post on the Sarcoma Alliance bulletin board lamented how difficult it is to wait for results of various sorts of tests. A no-brainer, right? We all hate the waiting game. But Olga, a prolific and highly knowledgeable poster there, began her reply this way:

Re: Hating the Waiting

by Olga on Mon May 18, 2009 4:59 pm

Gail,

for many on this board the waiting time is all time they have - and paradoxically it might be the best time that they have left before they start treatments or they get the bad news so I strongly suggest to the people reconsider your attitude to a waiting time trying it to pass faster, it is better to enjoy it then discount it, use it to do something really good for yourself and the family that you might not have a chance to do later if ever.

I find this harsh, depressing, slightly out-of-place and, sadly, more true than I would like.

It is hard to wait. But it is also hard to process bad news, and, no matter how much we might claim otherwise, the stress of waiting on a result isn't as bad as being confronted with a terrible reality. For people who have metastatic cancer, and have made whatever accommodations they can to regular doses of bad news and a problematic future, waiting can be an act of hope. The cancer rock has already fallen, so as long as you are waiting for a CT or MRI or whatever, your situation could be improving. When you get that report, though, the news is there. The result is the result. And, too often, the facts are worse than the fear.

Not good

The CT showed a number of specific changes to my lungs -- they've formed a variety of pits and nodules -- including the collapse of my recently re-operated on right lung. They also found growth in the tumor on my hip muscle and growing lymph nodes up along my spine, which may explain why I've had a such a terrible time in terms of pain and mobility over the last few weeks.

They had already called the drug company when we went in to discuss these results and, indeed, I was taking the placebo. So now I will see if the real drug can do anything for me. Perhaps it can -- I certainly was doing a whole lot better on drug (if only for a little while) than without it.

I was feeling lousy before the news, and now I feel worse: hearing it seems to have (temporarily, damn it!) drained the well of optimism, strength and BS I use to get through this whole thing. Yes, I'll absorb this and move on and learn how to manage the symptoms better, but right now I can barely function.

Gone fishin'

Well, not exactly. We're going to New York again tomorrow for a six-week brivanib doctor's appointment. I will have a CT scan and we will decide where we are at. It's a little hard to know what to hope for in light of the placebo issue. Part of me wants there to be absolute minimum progression, just enough to break the code and re-prescribe the live drug. Part of me thinks that stability (and by this I mean the tumors more or less staying still, not growing 14 percent for technical "stability") on placebo would be great, since I'm dealing with a lot and need all the rest I can get. And, of course, there's the fear that the tumors have broken out of the box and run wild over the last six weeks. I'm trying to deprive that thought of oxygen, though.

And, hell, the tumors could just all be dead. That would be fine. Preferable, in fact.

All this to say that I will probably blog the results if I can, but not much beyond that. L. introduced the dream of seeing the late Picasso show at the Gagosian, which would be amazing if physically possible. (Here's an audio slideshow about the show.) There will also be dinners, of course, hopefully amazing ones. And yes, cocktails on the Soho Grand's luxe couches, where the lighting is so sweet and the ceiling so beautiful that for minutes at a time I can sit there with my lovely wife and feel glamorous, a sensation in short supply in my real life.

The quality of attention

I'm not sure if the book will live up to the promise of its topic and thesis, but I enjoyed this review of Winifred Gallagher's book Rapt. It's a subject dear to my heart: I've never been great with full and focused attention, even before the internet, and I'm more vulnerable than most to the rich range of distractions connectivity offers... facebook, twitter, blogs, sports bulletin boards, wikipedia, the netflix queue. This innate vulnerability is exacerbated by my current situation -- quite often, I'm looking for distraction.

And yet attention offers such rich rewards (the quote is book reviewer Laura Miller laying out some of author Gallagher's thoughts):

Winifred Gallagher's new book, "Rapt: Attention and the Focused Life" argues that it's high time we take more deliberate control of this stuff. "The skillful management of attention," she writes, "is the sine qua non of the good life and the key to improving virtually every aspect of your experience, from mood to productivity to relationships." Because we can only attend to a tiny portion of the sensory cacophony around us, the elements we choose to focus on -- the very stuff of our reality -- is a creation, adeptly edited, providing us with a workable but highly selective version of the world and our own existence. Your very self, "stored in your memory," is the product of what you pay attention to, since you can't remember what you never noticed to begin with.

Gallagher came to appreciate this while fighting "a particularly nasty, fairly advanced" form of cancer. Determined not to let her illness "monopolize" her attention, she made a conscious choice to look "toward whatever seemed meaningful, productive, or energizing and away from the destructive, or dispiriting." Her experience of the world was transformed. This revelation naturally led her to wonder why she'd had to exert herself to do what made her feel better. Why didn't she turn to it as naturally as a thirsty woman turns to a glass of ice water? Why do we reflexively award more attention to negative or toxic phenomena like disasters and insults, while neglecting to credit small pleasures and compliments with the significance they deserve?

*

Bonus: If you enjoy the HBO series In Treatment, as L. and I very much do, check out Terry Gross's interview of Gabriel Byrne. His thoughts on the centrality of listening -- not to mention his clever riffs on desire, the priesthood and Ireland -- are well worth forcing oneself to sit still for a half-hour and focus...

Dog day

You wouldn't know it from my rant against The Repellent Gus, but I love therapy dogs. (It's the people who come along I'm skeptical of...) So I was disappointed to read of a study that indicates that they can become agents of death, spreading MRSA and nasty vancomycin-resistant fecal bacteria beyond the hospital doors. Possible remedy: Don't kiss the dog and do the Purell before and after.

Here's the NYT Well blog:

Canadian researchers studied 26 therapy dogs who visited patients in hospitals or long-term care facilities. Before and after each visit, a dog’s forepaws and the hands of its handler were tested for three bacteria that commonly cause hospital infections — Methicillin-resistant Staphylococcus aureus (MRSA), vancomycin-resistant enterococci and Clostridium difficile. To detect whether a dog was carrying germs on its fur, the researcher also sanitized her hands, petted the dog and had her hands tested for the pathogens.

None of the dog paws, handlers or the researcher tested positive for the bacteria before the hospital visits. But after the hospital visits, two of the dogs were contaminated. One dog, a greyhound, had C. difficile on its paws. Another dog, a pug, appeared to pick up MRSA on its fur. (MRSA was found on the hands of the investigator after she petted the dog upon its return.)

So how did the dogs end up as carriers of the risky germs? The dog with C. difficile had shaken paws with several patients. The pug with MRSA on its fur had spent time in patients’ beds and was kissed repeatedly by two patients.

Color

Since I talked about feeling gray, here's Barbara Kingsolver in the title essay of her collection High Tide in Tucson:

In my own worst seasons, I've come back from the colorless world of despair by forcing myself to look hard, for a long time, at a single glorious thing: a flame of a red geranium outside my bedroom window. And then another: my daughter in a yellow dress. And another: the perfect outline of a full, dark sphere behind the crescent moon. Until I learned to be in love with my life again. Like a stroke victim retraining new parts of the brain to grasp lost skills, I have taught myself joy, over and over again.

I'm not there yet, but I'm trying.

Down with the gown

A hospital gown's design seems frivolous -- until you are doubled over with fever and exhaustion and chemo trying to tie the damn thing up with trembling fingers.

Today's Wall Street Journal has a nice piece about fledgling efforts to reform the johnny. How about making it easy to fasten? A pocket, perhaps? Make the fit a little more flexible and less prone to indecent exposure? And, of course, any new design also has to be ridiculously durable and affordable if it is to have any chance of replacing the old:

The traditional American hospital gown -- flimsy in front, open to the breeze in the back -- has been around about as long as the Band-Aid. If anything, it has changed less.

The one-size-fits-none garment remains one of the least loved aspects of American medicine.

I have a little more about the healing power of hospital aesthetics in this old post.

A faded poster of golden retriever puppies peeking out of pastel flower pots was taped to the ceiling directly above the bench where patients lie [during radiation]. I guess the idea was that people could distract themselves with fluffy puppies while their flesh burned.

... and something genuinely encouraging

It was posted in 2006, but I enjoyed reading Jeanne Sather's piece Don't Write Me Off in the midst of my grays. Four-and-a-half years ago, an M.D. Anderson doctor told her further treatment for metastatic breast cancer was "... reaching the limits of futility."

Futility. It's 2009, she has other doctors, and she's vehemently still here.

The piece also reports on yet another M.D. Anderson dirty secret: They don't routinely give second opinions (at least not to breast cancer and sarcoma patients). Why not? They aren't profitable.

Fear not, y'all!

Senator Arlen Specter is on the case.

The man with no friends -- Republicans, understandably, despise him and Democrats, understandably, mistrust him -- is going to beat cancer. In fact, he is going to build a bridge over the valley of death.

Feel better?

specterforthecure.com:

For years and years, billions of your tax dollars have paid for medical research. There have been great discoveries – actually, we learn more every day – but where are the cures?

Between scientific discoveries and treatments which help ailing Americans is what many researchers call a “valley of death”. People are suffering, even losing their lives, who need not.

Today, that starts to change. Senator Arlen Specter intends to build a bridge over the valley of death.

Gray

I'm trying to write and nothing comes. I've always found the bad times the hardest to capture: It's easy to get motivated to tell stories or to show what the kids were like in the hotel pool, gleaming and streaming like pale seals, hair slicked back so their bright eyes and huge grins seem bigger than life and suddenly grant fresh understanding of the word "radiant." But the blah stuff, the grinding pain, melancholy, worry, sleeplessness -- who cares about that? Or, rather, who cares to write about it?

I want to be honest, but I also have an intense desire to be liked. We are conditioned to be cheerful and optimistic, after all. Or at least to overvalue those traits. I imagine my pain making me unlikeable -- after all, I don't like it. I'm not going to break through that barrier today, and I probably lack the skills to illustrate what the last few days have been like even if I cared to. My writing palette lacks the number of shades of gray I would need to delineate the mental and physical ache of a stubborn disease.

I'm in a gray place: Thick, clammy fog or the smear of a dirty pencil eraser. I am curled up there hurting and waiting for the love of my family to bring me once again into the light.

H-E-double hockey sticks

I was perusing the Sarcoma Alliance blog and stopped to chuckle at a T-shirt someone was wearing at a benefit run: "What the hell is a sarcoma?" (I have answers to that, yes I do.) I kept reading and found that the shirt had provoked a minor controversy, spawning a redesigned version sans the blunt reference to a place of eternal torment. Both are available here.

By the way, I'd encourage sarcoma patients to repopulate the once-useful resource of the Sarcoma Alliance's bulletin board. A switch to new software and a different registration process seems to have reduced traffic there, which is a shame.

Sarcoma on Twitter

I didn't see the point of Twitter from reading about it, so I signed up for an account a few days ago in order to get a sense of what it was all about. I didn't want to use my real name -- and I thought "Sick Guy" might sound weird without any context -- so I made a millisecond decision to log on as sarcomaguy. (I guess that choice tells us, again, what's usually on my mind.)

After a few days of goofing around reading what some smart writers and bloggers muse about when they are procrastinating, a strange thing happened: Some strangers decided to become my "followers." Since one can hardly disappoint a "follower," I wrote a couple of posts, er, "tweets." I've now impulsively decided that I am going to try to keep sarcomaguy updated with little observations, tips, links and thoughts from the world of sarcoma. I don't envision that many people will be checking it in real time on their cell phones, but I will also occasionally post personal breaking news -- scan results and the like. That said, the focus will be broader (and shallower) than here -- I'll probably link to some of the great stuff that, say, the Liddy Shriver Sarcoma Initiative puts out that doesn't directly apply to epithelioid sarcoma. If the feed can attract a little interest, I'll do my best to find good stuff to share on it.

Anyway, feel free to join my tiny band of followers and say hello if Twitter interests you.

Must I live with you, Pain?

Bill Stuntz is a professor of law at Harvard facing metastatic colon cancer. He is also a conservative and evangelical Christian. His blog is wonderful, but I rarely read it -- a shame, since every time I do, I find something that influences or echoes my thoughts. Today I found at least three things I wanted to link to or comment on (including an interesting idea for Souter's replacement), but I'll stick to this poem about pain by Edna St. Vincent Millay.

And must I then, indeed, Pain, live with you

All through my life? Sharing my fire, my bed,

Sharing — oh, worst of all things! — the same head? —

And, when I feed myself, feeding you, too?

So be it, then, if what seems true, is true:

Let us to dinner, comrade, and be fed:

I cannot die till you yourself are dead,

And, with you living, I can live life through.

Yet have you done me harm, ungracious guest,

Spying upon my ardent offices

With frosty look; robbing my nights of rest;

And making harder things I did with ease.

You will die with me: but I shall, at best,

Forgive you with restraint, for deeds like these.

Snacks (or attacks?)

Proving that there's a home for anything on the web, a blog is devoting itself to showing pictures of hospital food from around the world. Some of the foreign stuff actually looks OK, and the Japanese, of course, win for presentation.

Briva-not

Yesterday, my blood pressure came in at 90 over 64 -- nowhere near convincing me that I'm mistaken about having been randomized into the placebo group.

That leaves me with the absurdity of sitting down on my bed each evening before sleep, getting out a formidable white bottle marked brivanib OR placebo, and swallowing four big pills. (Kathy also believes/knows she's in the placebo group; her take on swallowing the probably inert pills was something like "these taste like smarties." I laughed; it beats driving a fist through the wall.)

I've looked at the bottles closely; no clues, no A or B or 0 or 1 at the end of a reference number that might indicate the contents. The pills themselves look and feel the same. I notice -- or think I have -- that the presumed-placebo brivanib pills soften in my mouth quicker than the real deal did; if I don't wash them down quickly, which isn't the easiest thing since they are the size and shape of torpedos, the pills develop a gluey quality. The first time this happened, I thought, "Paste eater!" to myself. (I think that might have been a bizarre insult hurled by a nasty schoolgirl in one of the Lemony Snicket series of unfortunate events books.)

I wonder, but I could just cheat the study. I received a full bottle of real brivanib just as my lung problems started to ramp up. No one confiscated them during or after my hospitalization. I could swap out a pill -- since I imagine the brivanib in my possession will be destroyed when I return it -- and fool around with it and definitively see if there are any differences with what I'm taking now. I could have even, I suppose, taken the real pills instead of the placebo this go 'round, though I wouldn't want any tumor-smashing success mistakenly attributed to the paste pills. I'm also way too much of a goody-goody to break any rules, so the point is moot even though I look at my bagged bottle of the real stuff longingly.

I know this is an inert post (albeit with accidental bonus bad jokes), but it's hard not to get obsessed with this kind of stuff if you are in a placebo-controlled trial. It's hard, even, to leave it behind when you know you are no longer on drug. So chalk this one up for the other folks in the brivanib study who are dealing with this now or may have to deal with it in the future.

Fame!

Seattle Times columnist Nicole Brodeur has a nice write-up on Josh and an upcoming screening of his epithelioid sarcoma documentary My Left Hand.

The camera sits in on Isaac's appointments at the University of Washington Medical Center, his pensive strolls through Gas Works Park. The roughhousing with his two young sons.

There is a strange sort of fun in a scene in which Isaac allows his son to pull out clumps of his hair after chemotherapy; and another in which his friends supportively shave their heads at Rudy's Barbershop.

But there is great sadness watching Isaac remove his wedding ring, since he won't have the hand to wear it.